Seen, and Heard

Astonishing, isn’t it, how good it feels when someone actually listens to you? Especially when it’s a doctor, and it’s kind of their job.

I’ve got a decent list of doctors and specialists built up, over time… the regular old primary care physician… a neurologist, for the migraines and the seizure follow-up… an anesthesiologist/spine specialist for my back… an OB-GYN… and with the exception of neurologist, they’re all group practices, so I actually have at least a dozen doctors sprinkled in there.

I was already going to the doctor regularly for the spinal issues – once every two months, and extra if I was having any procedures done – and of course adding pregnancy to the mix has only increased that tendency. It’s a rare week that goes by without finding me in some sort of medical office.

For the most part, I’m very pleased with the care I’m getting. I’m quite comfortable finding a new doctor when one strikes me as obnoxious or incompetent, and over time I feel like I’ve built up a good team. But just lately, I’ve had a simmering frustration around the topic of medication.

See, for my back, I’m on an opiate – a medicine called Opana, which has apparently been out in the world since the late ’50s, but had been taken off the market in pill form for a long time because it’s pretty potent and, apparently, has a high potential for abuse. (As someone who has an actual chronic pain issue, I find myself reluctantly but inevitably joining the ranks of those who get irritated at the recreational users; your high makes my care that much more difficult to pursue.) It was returned to the market in 2006, either because they think they’ve got better pharmacokinetics in place to keep the drug from being quite so street-popular, or because they decided, what the hell, people are going to abuse something no matter what, might as well make it available to the people who would benefit from it.

Anyway, that’s what I was prescribed after the seizure in July, because after a bunch of tests came back negative for any sort of organic cause for the seizure, the verdict was that it was due to the combination of pain medication (Ultram) and antidepressant (Zoloft) I was taking at the time. I promptly stopped taking both, and, lo and behold, no more seizures. And they put me on Opana, in an “extended release” form that I’m supposed to take every 12 hours, regardless of the pain level at the moment. It took a little time to get used to – and I do also have an in-between immediate-release medication for the bad days – but overall I’ve been very pleased with the drug. I’m functioning, I don’t have much pain, and I don’t feel dizzy or goofy or high through the day. (I know, I know, it’s tempting to joke and wonder, “Why on earth would you not want to be high all the time?” But the reality is, it’s actually not all that fun or pleasant to feel like you’re two steps behind the rest of the world, every single day.)

So, that was going well, and it’s the first thing I followed up on when I got the positive home pregnancy test. And each doctor I’ve spoken to – and I have asked absolutely every one I’ve seen about it – has assured me that there are no inherently teratogenic effects, and so I could safely continue taking the medication while pregnant. The only caveat was that I should try and wean off by the third trimester, so that the baby was not born dependent on it. “We’ll find something to replace it with then,” they would say, and then move on to the next topic.

After a month or two, I started asking, what would we replace it with? How quickly should I be trying to cut back? I just wanted a plan, preferably with deadlines and timeframes. And, from each and every doctor, I got a collective shrug and a metaphorical pat on the back. “Don’t worry about it,” I was told. “We’ll figure that out as it gets closer.” The OB-GYN went so far as to say, “Well, it’s really not that big of an issue. If you can’t wean off the Opana, we can just get you a referral to talk with a neonatologist, and they can help with any issues the baby might have after birth.” I suppose they were trying to be reassuring and non-pressuring, or something, but it was a little bit infuriating, to want a battle plan and be handed a sit-back-and-relax plan.

Then, when I went to New York City for the weekend for the Jon Stewart show, I left my medication at home. Just got distracted and scattered while packing, and somehow ended up leaving it on the bathroom sink and walking out. I had skipped my morning dose already, and we were all the way in New York State before I went looking for the medicine bottle and realized I didn’t have it. I did my best to tough it out, but by 9:00 p.m. I was into full-on withdrawal symptoms, and let me tell you, that is very, very unpleasant stuff right there. I started back on the meds as soon as I got home, but with an increased determination to wean off – because there is no way on God’s green earth that I will set my child up for that kind of physical misery.

So, I’ve continued to cut back, and am pleased with my progress so far; started at about 40mg a day, and most days now I’m down to 20mg. My goal is to get down to 10mg a day, and then switch to whatever replacement is recommended then.

And, finally, today, I had a doctor sit down and really listen to me, and talk it through. He was at the pain clinic, a guy I hadn’t previously seen. He managed to hit the precise balance between concern about the pregnancy, without edging into judgmental and negative sort of territory. He wrote me a script for the next step down on dosage, and provided me with a list of alternative medications to research and think about (many women are offered Ultram, but with my history, that one’s effectively off the table).

It just felt good, to be heard and worked with. I had already come up with a plan on my own, but today that plan was reviewed and validated by someone with the right letters after his name so as to lend his opinions some authority. I even know what I’ll be able to do, medication-wise, after the birth (in short, go right back on Opana, because its bioavailability – the amount that actually gets sent into the bloodstream and used by the brain and neurons – is so low that by the time it gets processed by my body, some portion of that passed into breastmilk, and then is broken down by the baby’s body, the remaining amount of drug is darn near undetectable.

So, with all of that babbling aside, the short version is, I’m feeling good. And heard.

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It does make such a difference when doctors actually listen, doesn’t it? My husband is having a hard time right now because he doesn’t feel that his pain doc or his neurologist are listening to him. It’s making him very frustrated by it all.

So few people believe me when I tell them about my problems with Ultram. It seems to be a go-to for so many. I’m so glad you have good help for pain-management. I’ve always said if I were granted one superpower, it would be the ability to project the pain I’m feeling =p

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